Death of a Superhero

A Family's Story about Courage, Bravery and the Defining Moments of LOVE

Our sweet, lil' baby love lost his battle to AML Leukemia on March 8, 2010. We fought long, hard and very aggressively for 2.5 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 years old.

This entire blog is about Hunter's amazing journey. It's about his life and his love......his determination and his courage.......his absolutely, brilliant personality, and the affect he's had on people all over the world.

He's left an unimaginable footprint on this earth and has changed the lives of thousands of individuals. People who didn't realize how precious life was, now live it with extreme gratefulness. People who took every minute they get to spend with their children for granted, now savor every last second. And people who weren't quite sure what love is all about, now love deeper, love stronger and love with every ounce of their soul.

People all around the world have shared their love, their well wishes, their prayers and their inspiration, and we could have NEVER achieved as much as we did without them. We are humbled by their generosity & their true friendships & are forever grateful for every last person that has come into our lives through our experience with Hunter. He was our precious baby love who we loved and cherished with all our hearts and we are forever crushed and terribly, broken-hearted.

Dance in the clouds baby cakes. Mom & dad are watching proudly & you will remain so very close to our hearts for all of eternity.

Monday, August 3, 2009

Dad is back

Hi guys,

It's dad and I've been away from the blog for a very long time. It's about time I say thank you.

First, of all let me say thank you to Lenore. What a woman. I love her dearly and I'm always impressed by her ability to communicate our journey. As devastating as this disease is - it hasn't attacked our relationship. We continue to draw strength from each other - day and night. We both acknowledge the power of positive thoughts and even when things are hardly positive we keep pulling each other out of the mental blackness that surrounds us. I couldn't do this without you - thank you my love.

I also want to thank the many people that have helped us over the past two years. This is the journey of a life time and not one to go alone. Thank you for all the moral support. Thank you to everyone that have donated money or time. We would be in a very different space if not for you. Every single last person. Thank you for buying a t-shirt or a chapstick. Thank you for donating gifts for our fundraisers. Thank you to all the people that we have never met but have heard our story and then contributed to our lives in some way. The kindness and compassion never ceases to amaze me. I had no idea people could be so compassionate. I am humbled by you.

Extra special thanks to the Kobbe's for being the kindest and most generous people I have ever met. Now that we have been home for 4 or 5 days we have had the pleasure of waking up and going to bed - to the most beautiful healing view of Oregon's wine country. It's one in a million and so are you both. Thank you - thank you- thank you:-)

As I mentioned before we are home. After 104 days straight at the hospital they released us late last week. Out of the past 7 months we have been home about a total of 3 weeks. So going back to the hospital almost every day for check ups is a small price to pay for a little freedom. Hunter is stable with no fevers but his energy is low and he seems to be without his usually strong life force. It has us deeply concerned. He lays in bed all day and still isn't eating. We feed him by NG Tube ( I call it the nose hose) and we give him a concoction of liquid drugs thru the hose three times a day. I think we are administering somewhere between 9-12 life saving drugs a total of 20-30 times per day. It's a full time job. Then we have to get food and water into him - again thru the hose. Too much fluids at one time cause him to vomit so we are constantly balancing between too much and not enough. It's rough and somewhat discouraging to watch him so low. However, we have to be thankful that the fevers are gone and especially that his bone marrow came back free from cancer. It was only a week or two ago when we were thinking the worst was happening and the terror of losing Hunter crept into our minds and destroyed us until his marrow results came back free of cancer. That was a huge relief - when we got the wonderful news - Lenore and I held each other and sobbed for 30 minutes absolutely overcome with joy. What a ride. LOL.


MKPatrick said...

Dear Zen, Lenore & Hunter,
Our deepest love and powerful wishes to you for continued strength and health. the grace with which you've handled your journey with all its bumps has been awe-inspiring. You are my heroes.
Love & Light,
Mary Kay

Matt Nolan said...

Absolutely incredible. Good to hear from you, Zen, amazed by your resilience and determination. Lenore and yourself are an inspiration to ALL Parents.

Hunter will get stronger, now that he's Cancer free, I just KNOW IT! Hang in there- Matt

Anonymous said...

You two are such an amazing couple! Your love will continue to see you through this...

Anna Marie

Tara said...

So glad you were able to come home...and that hunter's fevers are prayers and thoughts are still with you in your families time of need. Sweet blessings to the 3 of you...~

Unknown said...

Zen & Lenore:

What a beautiful letter Zen....I love you all so much and I am just so inspired by your strength.

May your love guide you through this process.

Much love and blessings to you!
Love you both,